[photos] Minerals and beads

Yesterday, in the company of the delightful Diana Rowland, I visited Mama’s Minerals prior to my departure from Albuquerque. I procured a souvenir or two, then wandered the store while Diana shopped more intensively. One of my photographic loves is the intersection of texture and color. I’ve spent many happy hours at farmers’ markets shooting vegetables, or jn fabric stores taking pictures of colors and textures. Here, I soon realized, were beads and minerals of all descriptions. All I had with me was my iPhone 5, so these photos are within the limitations of that device.

[cancer] How to be sick, how to die

Yesterday on the plane home from New Mexico, I read a book Lisa Costello had given me called How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers, by Toni Bernhard [ Powells | BN ]. It was an interesting read, raising a number of points which resonated with me, and few which fell flat for me. Being a Buddhist, Bernhard isn’t even remotely prescriptivist in her observations, which I appreciated a great deal.

This morning, Lisa and I were talking about the book. Once again, I am struck at how cancer (at least in my case) falls ambiguously between the usual working definitions of chronic and acute disease. Bernhard writes from the point of view of someone with Chronic Fatigue Syndrome, which for her is persistent and pernicious with unrelenting symptoms. For me, cancer has certainly been persistent and pernicious, but I can count on the fingers of one hand the number of days in the past five years in which the disease has expressed noticeable symptoms.

My treatments, on the other hand… Over thirty days of hospitalization. Five major surgeries. Five minor surgeries. Over 1,600 hours of chemotherapy. Close to two cumulative years spent coping with extreme chemotherapy side effects. Almost four calendar years continuously coping with relatively minor chemotherapy side effects.

Yet I just spent a week at a writing retreat in New Mexico at 10,000 feet of altitude, and arrived home at almost midnight from a long travel day. Something Bernhard could never have done. Something most sick people could not do. Admittedly, my mobility was reduced by the Vectibix sores on my feet, and my medication-induced sun sensitivity kept me indoors — I paid some prices — but I was still able to derive considerable enjoyment from the experience.

I come back once again to the question of whether I have been a sick man who is sometimes healthy, or a healthy man who is sometimes sick?

At this point, given my terminal prognosis, the question is entirely moot. I started Regorafenib this morning. That means that yesterday was probably the healthiest day in my remaining life experience. I am embarking on the downhill slide into death. But still I wonder. For me, cancer has largely been an invisible disability, unless you catch me on a very bad day or see me with my shirt off to wonder about the surgery scars and skin disruptions. Yet it has overtaken my soul, metastasized into my entire life and social network and circle of love and friendship. I have shouted its discontents across the rooftops of the virtual world.

That I have a voice to shout with is itself a sort of secular miracle.

Right now, my reaction to Bernhard’s book How to Be Sick is to want to write a counterpoint on how to be sick with a disease that wanders back and forth across the false dualism of chronic and acute, that is both invisible and as noticeable as a bonfire in a library. Her experience and mine have a great deal in common. At the same time, deathly illness is a road we all walk alone, no matter how great our escort.

More to the point, I suppose I am writing a book on how to die, one blog post at a time.

[travel|cancer] Going home today, various other thoughts

I am flying home from Rio Hondo today. (Well, actually, we are driving from here to Taos to Santa Fe to Albuquerque, then I’m flying home from there. I will be about 17 hours door-to-door in transit.) I have been extremely happy to be here, but it will be nice to get back to a decent amount of O2 in my lungs. At this altitude I am always short of breath, sometimes extremely so. And always a bit fatigued. There has been much critique, much discussion of writing and publishing, a certain amount of writer gossip, some strongly personal conversations, way too much excellent food (if that is indeed possible) and not enough sleep all around.

Ever since the terminal diagnosis I’ve been bouncing around like a superball inside a paint shaker. The Nebs, then here. Now home again. All this busy-ness has kept my fear somewhat at bay, but it creeps in. I am also now scheduled for a CT scan on Tuesday, which always lends its own special terror to my inner life. I’ve been able to forget the fear for swathes of time as I’ve been so immersed in writers and writing culture, but I am afraid.

Most people don’t really want to die. And few of us get to plan our deaths. At least not at my age. Yesterday, talking to my dear friend John Pitts on the phone, he asked what I’d done about planning my funeral. These are the conversations I have these days. Sometimes I despair.

Then I look around, go back to my writing or my friends or a good book, and keep going. I cannot live on fear and despair, and I don’t like giving them power over me. These are my days. I try to spend them well.

Which is what I have been doing here at Rio Hondo, among friends and writing. Spending my diminishing ration of days well.

[writing|photos] Rio Hondo continues

I awoke this morning from dreams of loss, conflict and Walter Jon Williams. This may have something to do with the excellent gumbo he cooked last night, followed by bananas Foster.

Donnie Reynolds (@dratz of Waterloo Productions) left yesterday. He was kind enough to finish cooking my momos Wednesday night when my feet gave out, but more importantly, interviewed me yesterday morning, then filmed the critique session for “Rock of Ages”. It was good critique, a combination of solid criticism and some important story points, along with validation that the story was doing enough of what I wanted it to do.

My two regrets here at Rio Hondo are that my feet continue to be troublesome, and that my trailing sun sensitivity issues courtesy of my friend Vectibix have not only prevented me from hiking (which given the state of my feet is probably a bad idea anyway) but even from going outdoors at all. I continue to wrestle with the emotional fallout from the recent diagnosis, but being here at the world’s greatest Writer Camp is allowing me to parse it in small bits while immensely enjoying my days.

Oddly, I’m not getting much writing or WRPA done. This done not bother me. I am on vacation, after all. I’m spending hours each day immersed in manuscripts and critique, and hours more in fascinating conversations about everything from Age of Sail combat to social media personae for authors. Not to mention publishing gossip, convention horror stories, plotting sessions and all the other things writers get to talking about when you cram us alone together in a few small rooms for a week.

Meanwhile, a few more photos of the faces of Rio Hondo:

The marmot what hangs out in the lower parking lot — I did not have my 300mm lens on the camera body at the time, unfortunately

[photos] Some more of the faces of Rio Hondo

[events] Rio Hondo, day three

More critique yesterday. More food. More fun. My Aunt M—, who lives in Colorado, turned up with pies. @dratz of Waterloo Productions arrived last night to shoot some Lakeside footage here at Rio Hondo.

My METAtropolis: Green Space novella “Rock of Ages” is being critiqued tomorrow. This means I don’t have to do any critical reading today, so I’m cooking momos [ jlake.com | LiveJournal ] for tonight’s dinner.

Still struggling a bit with the altitude. Had a terrible night’s sleep last night. I did okay the night before, thanks to my friend Lorazepam, and will probably have to do that again tonight. And I regret not being able to go out hiking here during the day, as my UV issues from Vectibix linger on.

[writing] Rio Hondo, day one

I’m at Rio Hondo, the writing workshop/retreat in Taos Ski Valley, NM. Critiquing etc starts today, but I suppose yesterday was day one. That involved a lot of travel, a quick visit in Santa Fe with Lisa Costello, who just happened to be there, and a yummy dinner here at the retreat. This morning I woke up to snow.

Altitude isn’t treating me badly, but I do have a mild headache. And my classic high altitude sleeping problems are making themselves known. Basically, while I don’t have any problem staying oxygenated while conscious, asleep my breathing is reduced and I wake up every hour or so feeling very short of breath. I have to consciously take very deep breaths to restore myself. That process makes it hard to go back to sleep…

My METAtropolis: Green Space novella will be critiqued Thursday, and I believe I am making momos for Wednesday dinner. I’ve already taken a number of photos, but bandwidth here is quite constrained, so the uploading process is wonky at best. Still, I will leave you with this morning’s view: